Ever since the firestorm started over the “Double-Kellering” (a term I’m borrowing from my friend ChemoBabe) of Lisa Bonchek Adams over a week ago now, I’ve been thinking about some of the additional various issues and angles there are to this story. Perhaps this is a far bigger story than two journalists bashing one woman with metastatic breast cancer and her tweeting habits. Perhaps we’ve only reached the tip of the proverbial iceberg.
In my mind anyway, this story has become (and actually always was) about so much more. In fact, I’m even beginning to wonder if in the long run, the Kellers didn’t do us all (except for Lisa Adams of course) a favor because as I attempted to point out in my first piece about their articles, there are important issues raised here that merit further discussion. Both Kellers totally missed the mark. But perhaps some good can come of it now – further discussion about some of those issues.
I’d like to think that Emma Keller was hoping to open up discussion about one or two of those things in her original piece which again, has since been taken down, but she went about it completely wrong. You can click here to read an archived version of Emma Keller’s piece via Breast Cancer? But Doctor…I hate pink! (thank you, Ann) because things never really disappear on the internet. Something all of us should keep in mind. Yikes! Or not…
I am in no way, shape or form excusing Emma Keller. Both Kellers screwed up big time. And now after the fact, they seem to be continuing to profess that they were misunderstood. Well, an awful lot of people “misunderstood” in much the same way. The Kellers’ denial seems like classic “not taking responsibility for my actions” kind of logic.
I’d like to share my list of some of the issues this whole debacle has stirred up, in my mind anyway. And no, they are not in any order of importance. And by the way, I thought about trying to include links to some of the well-written pieces about all of this out there, but decided I better leave that task to others. A good organizer I am not. I can barely organize my own ramblings, much less anyone else’s. For starters, you can check out this list put together for the Breast Cancer Consortium’s site.
Some of the important issues stirred up for further discussion as a result of the “double-Kellering effect” might be:
1. The ever-rising influence of social media
2. The rise of the e-patient movement
3. Palliative care vs. hospice care (not the same thing)
4. TMI (too much information) – can a person share too much on the internet, or anywhere for that matter?
5. Health care disparity
6. Cancer language, more specifically, the use of war metaphors when describing anything about cancer eg. heroic measures, battling cancer, war on cancer, brave, warrior, fighter – the list goes on and on
7. Ethics in journalism, blogging, social media and anywhere we communicate publicly
8. Why society seems fixated on the smiley-face-pink-parade kind of breast cancer story representations (this one really gets me)
9. Reality of metastatic breast cancer and bringing it out into the open – why is there such resistance to talking about it?
10. Social media etiquette – do manners matter on Twitter and elsewhere?
11. Society’s invitation and acceptance to “live out-loud,” and at the same time encouragement to keep pain, suffering and certainly anything about death or dying quiet – a double standard of sorts
Undoubtedly, there are more things to add to the list. And yes, I’ll be addressing some things on this list in the near, or not so near, future.
What are your thoughts – can some good come of all this?
What might you add to this list?
Rage, Rage Against The Dying Of The Light | Fitness for Survivors
Wednesday 12th of March 2014
[…] you can do a quick search on the internet. I would recommend posts at Women with Cancer, Nancy’s Point, Breast Cancer Consortium, plus a terrific article by Robert Kessler on Gawker. These are […]
karen sutherland
Tuesday 21st of January 2014
dear Nancy,
love the list! you organized it brilliantly! I really liked what CC said about the organization of all the overwhelming emotional reaction...some times that is an enormous challenge, but so helpful to be able to see and understand the deeper implications.
much love and light,
Karen xoxoxo
Nancy
Tuesday 21st of January 2014
Karen, I wouldn't call the list brilliantly organized, but thank you none-the-less. I hope the conversations regarding the bigger issues continue. Thanks for your supportive words.
Amy Byer Shainman
Sunday 19th of January 2014
Thanks for a GREAT post Nancy! Excellent points.
Nancy
Monday 20th of January 2014
Amy, Thanks for reading. I'm glad you liked it.
Weekly Round Up – The Lisa Adams Edition | Journeying Beyond Breast Cancer
Sunday 19th of January 2014
[…] are many more “ethical” and psycho-social issues than appeared at first reading. As Nancy writes on her blog “perhaps we’ve only reached the tip of the proverbial […]
Lisa DeFerrari
Friday 17th of January 2014
Nancy, I think the topics on your list are all very important and well worth discussing. I look forward to reading your thoughts on any of them.
Besides the many excellent blog posts, there have actually been some good articles in the mainstream media about this debacle--it would really be something if all this could draw more public attention to the realities of mbc, and the need for more progress against it.
Nancy
Friday 17th of January 2014
Lisa, There has been a lot written since the Keller pieces came out hasn't there? Frankly, I've had to pull back and stop reading most of it. All this attention will be great if we can focus more on the realities of mbc and garner more genuine support, research dollars and meaningful attention in general to mbc. Will this happen? I'm not sure, but I hope so. Thanks so much for commenting.